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    • 2 hours, 32 minutes ago
      Jeremy Hanson likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      And sometimes I dream that I’ve run out of insulin and cannot get prescription refilled.
    • 4 hours, 25 minutes ago
      ConnieT1D62 likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      I providee an answer of low BG. But with that said, it is usually a false alarm (compression low from Dexcom sensor) With the stable bedtime BG and a TSlim X2 pump using CIQ and Sleep Mode, I consistently sleep between about 85 and 110 every night. The key to this is going to bed with a stable BG (85-110) and not having any IOB.
    • 4 hours, 29 minutes ago
      ConnieT1D62 likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      While middle-of-the-nght alerts are frustrating and irritating, I'm no longer terrified of dying from an extreme low in the middle of the night, so technology is still a win for me!
    • 6 hours, 5 minutes ago
      Janis Senungetuk likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      I get a notice of high glucose levels that occurred several hours ago!! WHY?
    • 6 hours, 7 minutes ago
      Janis Senungetuk likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      The same as Carrolyn Barloco. I often get messages in the middle of the night that my blood glucose level was either high or low 2, 3, or 4 hours ago. This is a completely useless piece of information, and absolutely NO REASON to wake me up. This is nothing but an ANNOYING alert. Tandem and Medtronic, if you're listening, please remove this function from your pumps.
    • 6 hours, 8 minutes ago
      Janis Senungetuk likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      I wake up with physical effects of lows. Odd thing is that if I am dreaming, I will often have the same effects within my dream. Like I will be on a plane to some exotic location and start searching for snacks! Does this happen to anyone else?
    • 6 hours, 9 minutes ago
      Janis Senungetuk likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      Yeah. Totally agree! This is totally unnecessary and extremely annoying.
    • 6 hours, 9 minutes ago
      Janis Senungetuk likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      My most frequent and favorite !!?? alarm at night is the one that tells me I had a high two hours ago! Duh!!!
    • 6 hours, 18 minutes ago
      KarenM6 likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      I get a notice of high glucose levels that occurred several hours ago!! WHY?
    • 6 hours, 19 minutes ago
      KarenM6 likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      The same as Carrolyn Barloco. I often get messages in the middle of the night that my blood glucose level was either high or low 2, 3, or 4 hours ago. This is a completely useless piece of information, and absolutely NO REASON to wake me up. This is nothing but an ANNOYING alert. Tandem and Medtronic, if you're listening, please remove this function from your pumps.
    • 6 hours, 20 minutes ago
      KarenM6 likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      Yes, I appreciate device improvements but some are just plain annoying and make a difficult journey Worse, not better. And the main complaint is unnecessary alerts the user cannot adjust.
    • 6 hours, 21 minutes ago
      KarenM6 likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      My most frequent and favorite !!?? alarm at night is the one that tells me I had a high two hours ago! Duh!!!
    • 6 hours, 21 minutes ago
      KarenM6 likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      Yeah. Totally agree! This is totally unnecessary and extremely annoying.
    • 6 hours, 26 minutes ago
      Wanacure likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      Why isn't going to the bathroom not on this list?
    • 6 hours, 31 minutes ago
      Wanacure likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      I wake up with physical effects of lows. Odd thing is that if I am dreaming, I will often have the same effects within my dream. Like I will be on a plane to some exotic location and start searching for snacks! Does this happen to anyone else?
    • 6 hours, 46 minutes ago
      TEH likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      My most frequent and favorite !!?? alarm at night is the one that tells me I had a high two hours ago! Duh!!!
    • 7 hours, 9 minutes ago
      Steven Gill likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      My pump, "I need to BG! I need to BG!" Such a cry baby it is!
    • 8 hours, 3 minutes ago
      Robin Melen likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      I get a notice of high glucose levels that occurred several hours ago!! WHY?
    • 8 hours, 50 minutes ago
      Mick Martin likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      I get a notice of high glucose levels that occurred several hours ago!! WHY?
    • 8 hours, 52 minutes ago
      Mick Martin likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      Yes, I appreciate device improvements but some are just plain annoying and make a difficult journey Worse, not better. And the main complaint is unnecessary alerts the user cannot adjust.
    • 9 hours, 17 minutes ago
      Anneyun likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      I wake up with physical effects of lows. Odd thing is that if I am dreaming, I will often have the same effects within my dream. Like I will be on a plane to some exotic location and start searching for snacks! Does this happen to anyone else?
    • 9 hours, 59 minutes ago
      Sue Martin likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      I wake up with physical effects of lows. Odd thing is that if I am dreaming, I will often have the same effects within my dream. Like I will be on a plane to some exotic location and start searching for snacks! Does this happen to anyone else?
    • 10 hours, 30 minutes ago
      T1diabetic likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      I get a notice of high glucose levels that occurred several hours ago!! WHY?
    • 10 hours, 31 minutes ago
      T1diabetic likes your comment at
      When your sleep is disrupted because of T1D, what are the most common causes? Select all that apply to you.
      The same as Carrolyn Barloco. I often get messages in the middle of the night that my blood glucose level was either high or low 2, 3, or 4 hours ago. This is a completely useless piece of information, and absolutely NO REASON to wake me up. This is nothing but an ANNOYING alert. Tandem and Medtronic, if you're listening, please remove this function from your pumps.
    • 10 hours, 52 minutes ago
      Velika Peterson likes your comment at
      Have you developed lipohypertrophy due to repeated injections/infusions of insulin? Lipohypertrophy is a term to describe hardened lumps of body fat just under the skin that resulted from repeated insulin injections/infusion sites. If so, share how you’ve handled lipohypertrophy in the comments!
      I stopped using those sites and paid more attention to rotation of available ones.
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    Have you ever volunteered with a diabetes-related organization?

    Home > LC Polls > Have you ever volunteered with a diabetes-related organization?
    Previous

    In the past week, how many nights was your sleep disrupted by device alerts, checking blood glucose levels, or treating a high or low?

    Next

    If you have T1D and have had a confirmed case of COVID-19, what symptoms did you experience? Please select all that apply.

    Sarah Howard

    Sarah Howard (nee Tackett) has dedicated her career to supporting the T1D community ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Marketing Manager at T1D Exchange. Sarah and her husband live in NYC with their cat Gracie. In her spare time, she enjoys doing comedy, taking dance classes, visiting art museums, and exploring different neighborhoods in NYC.

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    26 Comments

    1. Leona Hanson

      I’m usually no where near an organization to volunteer .I’m 2 hours from town and my other half does not get much time off to go anywhere.i don’t have a driver’s license.

      1 year ago Log in to Reply
      1. Mark Fuller

        Barton Center for Diabetes Education

        1 year ago Log in to Reply
    2. Karen Maffucci

      I use to many years ago. JDRF in Wyoming and Virginia.
      None recently.

      1 year ago Log in to Reply
    3. Virginia Barndollar

      I volunteer at Camp Courage, a week long camp for kids with T1DM. It is one of the best weeks of my summer.
      Most of our medical team also have T1DM so it’s great for us adults too.

      2
      1 year ago Log in to Reply
    4. Patricia Dalrymple

      Many years ago I went to one meeting. They served pizza and real coke at an organizational meeting. I didn’t go back. 😜

      2
      1 year ago Log in to Reply
      1. Vicki Breckenridge

        I was on the Community Leadership Board with the ADA for 10 years until they closed the office in Iowa. I worked as an RN at a free diabetes clinic at our county hospital. It was so rewarding!!

        1
        1 year ago Log in to Reply
    5. Bob Durstenfeld

      Yes, but not recently, I used to volunteer with a local Diabetes organization that no longer exists, I use to coach newly diagnosed teenagers and I would explain that T1D is like having a pet rattle snake, you have to feed and tend. But it may bit you anyway.

      4
      1 year ago Log in to Reply
    6. Mick Martin

      That REALLY depends on what YOU mean by “volunteered with a diabetes-related organization”.

      I have spoken with a Politician in the British Government about how useful using an insulin pump is in relation to treatment of diabetes. (I was the first person in the area of the country that I live to have been issued with an insulin pump (CSII or Continuous subcutaneous Insulin Infusion) and it made remarkable changes to my experience of living with type 1 diabetes.

      The idea put forward by my endocrinologist was that pump technology should be made more avaiable to a wider range of diabetes sufferers, and it was he that arranged the meeting between the Member of Parliament (Politician) and myself.

      Happily, more diabetes sufferers are now able to utilise [utilize] pump technology in the UK (United Kingdom of Great Britain and Northern Ireland).

      2
      1 year ago Log in to Reply
    7. George Lovelace

      I formed a Local Support Group for Insulin Users some 20 years ago. It is rewarding to see some of the kids grown up and now active themselves in supporting others!

      1
      1 year ago Log in to Reply
    8. Ahh Life

      Public speaking on living and managing the T1D condition. Quite an honor.

      Although, I should add, compliance, listening, and learning are not always my greatest virtues. I tend to talk about real life and real issues, all leaned in the college of hard knocks. I started attending that college at four years of age. I don’t think I’ll ever graduate.

      4
      1 year ago Log in to Reply
      1. Tom Caesar

        My impression is you have a PHD!

        1 year ago Log in to Reply
    9. connie ker

      I like to volunteer for research studies that I can participate from my home. I am a senior with T1D, but remember driving to our state capital with our 2 young sons for research. This was in the early 1990s and both were tested for markers of developing T1D. The labs reported younger son was positive, the older sibling negative. Sure enough even after taking pills in the research, positive son was diagnosed in 7th grade.

      1
      1 year ago Log in to Reply
    10. Marcie Dutton

      I volunteered this past summer for ADA camp. It was a wonderful experience! Will be applying again this year.

      1 year ago Log in to Reply
    11. Sherrie Johnson

      I am involved with Joslin in Boston. 50 year medalist study and another one studying stomach enzymes.

      1
      1 year ago Log in to Reply
    12. Nicholas Argento

      JDRF annual fundraising drive, big deal in my office- my team has raised on the order of $200,000 over the last 20 years…I’ve also testified before FDA on T1diabetes related topics at the request of some organizations……….and tried to get Medicare to change their STUPID dangerous pump policy requiring quarterly visits in order to get supplies, indefinitely, regardless of need. Some might remember the survey we did w myGlu- showed that 40% of those on Medicare w a pump adopted potentially adverse behaviors in order to cope with this madness, or had adverse outcomes. Medicare officials could have cared less and kept a baseless requirement in place, with no evidence basis for its existence, because we could not get strong enough evidence that it was harmful. This ignores the fact that their was no evidence basis for the requirement in the first place. ADA in their treatment guidelines explicitly states that no basis for mandatory timed follow up intervals exists. So we are stuck w a dangerous requirement.

      3
      1 year ago Log in to Reply
      1. Janis Senungetuk

        I donated artwork for a JDRF gala. When I offered to do a short presentation on life with long duration T1 at a public monthly meeting, my offer was dismissed because the time was needed to organize for another fundraiser. I haven’t volunteered for an organization since then. My diabetes-related volunteering has been as a participant in various clinical trials and in 50 Year Joslin Medalist research.

        2
        1 year ago Log in to Reply
    13. KCR

      I am a moderator for a DOC forum.

      1 year ago Log in to Reply
    14. Linda Zottoli

      I used to volunteer (ADA events and mailings, JDF fundraisers –I think that was the old name, sponsored support groups, etc.). It was a great way to have contact with others who often had similar issues that we could discuss. Now I guess I get enough contact on-line.

      1 year ago Log in to Reply
    15. Ernie Richmann

      JDRFf and Camp Ho Mita Koda, a camp for type 1 diabetic children.

      1 year ago Log in to Reply
    16. William Bennett

      Yes. I’m a moderator for TUDiabetes, a DOC forum.

      1 year ago Log in to Reply
    17. Kim Murphy

      I don’t know of any T1D organizations where I live.

      1 year ago Log in to Reply
    18. Mike Ecks

      yes, JDRF and family members have volunteered as well.

      1 year ago Log in to Reply
    19. n6jax@scinternet.net

      Yes.. but always rejected because I am OLD!! 18 years ago at 70 I tried to get involved with Joslin when I had T1D 50 years.. They wanted proof… All my Doctors were Dead.. I did not want a medal.. just study me to see why I was otherwise so healthy ?? From Sweet Charlie..

      1 year ago Log in to Reply
    20. Wanacure

      I volunteered once to sit at a table for local Winter holiday season: Ginger Bread House with JDRF. I used to contribute $ every year to JDRF hoping to speed a cure. As a college student I volunteered for many research projects at University of Washington and at Pacific Medical whenever I saw a poster or an ad in the campus newspaper. I started a Type 1 Diabetes Support group in my home via a Free University setup and learned a lot from other T1Ds who signed up, very rewarding.

      1 year ago Log in to Reply
    21. ConnieT1D62

      Yes in my late 20s and early 30s with ADA as a peer mentor for young adults with diabetes; from 2009 to 2019 as a PODS Leader and regional representative for for DiabetesSisters.org; and lately as a RN, MSN, CDCES (CDE) two days a month with a free clinic for the homeless and underinsured in Albany, NY.

      1 year ago Log in to Reply
    22. Randell Cole

      I use Dexcom G6 and have never had one that I did not have to calibrate a lot, I din’ feel they should advertise as reguiring no calibration

      1 year ago Log in to Reply

    Have you ever volunteered with a diabetes-related organization? Cancel reply

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